Research Recommendations

NCAI Policy Research Center works with tribes and other partners to respond to consultations and requests for input from federal agencies and other entities as needed to ensure that tribal research priorities are included.

Comments and Recommendations:

 

• U.S. Census Bureau Tribal Consultation on Differential Privacy. The U.S. Census Bureau initiated a tribal consultation on its 2020 proposed data products and its plans for disclosure avoidance (privacy protection) that include implementation of a statistical method called Differential Privacy.  NCAI sent a letter to the U.S. Census Bureau after much deliberation with a team of data experts and passed a resolution calling on the U.S. Census Bureau to ensure that the 2020 Census data is confidential, accurate, and accessible for tribal governance purposes. Read the U.S. Census Bureau tribal consultation letter, our NCAI response letter, NCAI resolution, and use our template for your letter as soon as possible.  You can also read our research update on Differental Privacy and view our recent webinar to learn more about this topic.

 

• NIH Consultation on the All of Us Research Program - NCAI Letter. NCAI submitted a letter with formal comments to the NIH tribal consultation on the All of Us Research Program that was initiated on March 24, 2019. NCAI wrote a previous letter on September 30, 2019 requesting the tribal consultation deadline be extended , and NIH did extend the deadline to November 30, 2019.  NCAI encourages tribal nations to submit letters by the deadline, and a template letter is included below along with our letter, its attachments, the prior letter, and the NIH tribal consultation letter and materials. We have also included a link to the NCAI Policy Research Center webinar on this topic in June 2019.

-- NCAI letter - All of Us Research Program Tribal Consultation - November 26, 2019

----Attachment 1 - NCAI Resolution#ABQ-19-061 - Calling Upon the National Institutes of Health to Consult with Tribal Nations and Establish Policies and Guidance for Tribal Oversight of Data on Tribal Citizens Enrolled in the All of Us Research Program

---- Attachment 2: NCAI Policy Research Center Research Update - Intellectual Property Rights and Tribal Nations (October 2019)

---- Attachment 3: NCAI Policy Research Center Rsearch Policy Update - Final Rule: Part 3 - Informed and Broad Consent (January 2019)

---- Attachment 4: NCAI Policy Research Center Policy Update - Final Rule: Part 5: Tribal Research Codes (January 2019)

---- Template letter

-- NCAI Letter requesting NIH to extend the time for comments to the consultation (see paragraph below, September 30, 2019)

-- NIH Tribal Leader Letter initiating the All of Us Research Program tribal consultation (May 24, 2019) and Framing Letter

-- NCAI Policy Research Center Webinar Series - All of Us Research Program Overview (June 2019) video and slides

-- NIH All of Us Research Program Tribal Collaboration Working Group Report (April 4, 2018)

-- NCAI Policy Research Center Research Policy Update - NIH All of Us Research Program - An Update for Tribal Leaders (February 2018)

• NIH Consultation on the All of Us Research Program. NCAI letter with comments about the NIH tribal consultation process, the need for an extension of time for comments, clearer timelines, challenges with RFI process, need for government to government consultation, protection of AI/AN data until consultation completed, and importance of incorporating tribal oversight into the process for the All of Us Research Program.

 

• NIH Consultation on Intellectual Property Rights in Biomedical Research - NCAI Letter with comments to NIH tribal consultation letter dated April 17, 2019  on NIH policies on Intellectual Property, Inventions, and Patent Rights in Biomedical Research. NCAI encourages tribal nations to submit comments. For more information, view the NIH letter, framing paper, webinar, and slides from the NCAI Mid Year Conference NIH tribal consultation on our 14th Annual Tribal Leader/Scholar Forum proceedings page here.

 

• US Census Bureau - NCAI Letter calling for immediate tribal consultation on the topic of differential privacy and access to AI/AN Census data. The U.S. Census Bureau plans to implement enhanced privacy protections for the 2020 Census which may limit access to certain AI/AN data tables. If you would like to send a simlar letter, here is a template letter (7/26/2019) and our research policy update on this topic.

 

• NIH RFI - Proposed Provisions for a Draft NIH Data Management and Sharing Policy (12/10/2018)

 

•  NCAI Summary of Proposed Changes and Comment Submission Details for the Notice of Proposed Rulemaking (NPRM) to Revise the "Common Rule" (11/18/15)

• Tracking Federal Research Priorities (The Common Rule NPRM 2015)

• Measuring Community Change & Impact to Improve Youth Wellness (08/20/2015)

• NCAI Comments on Draft NIH Genomic Data Sharing Policy (11/20/2013)

NCAI Comments on Advanced Notice of Proposed Rulemaking for “Human Subjects Research Protections: Enhancing Protections for Research Subjects and Reducing Burden, Delay, and Ambiguity for Investigators” (10/25/2011)

• National Indian Health Board Letter to the National Institutes of Health regarding NIH Research Funding and Review for American Indian/Alaska Native Populations (11/7/2013)

NIH Reports on Inclusion of Women and Minorities in Clinical Research

“Race, Ethnicity, and NIH Research Awards” (Ginther, et al. 2011) published in Science

Information on NIH’s efforts to eliminate Health Disparities, including opportunities for researchers with a dedicated commitment to Native communities

Tribally-Driven Research Agenda (2005)